Subscribe to the Unicorn Foundation e-Newsletter and become a Friend by entering your details in the spaces provided. Friends will be kept informed on the progress we make and how the donations are being allocated.

CommNETS Update from our NET Nurse Kate Wakelin

In early December, I was fortunate to be able to travel to Hawaii with John Leyden (Chair, Unicorn Foundation Board) and Jan Mumford (Consumer Advisory Group Member), to join 64 other others in attending the CommNETS annual meeting.

This was the second meeting of this group, and I was very much looking forward to hearing the progress of the many projects that had been commenced in 2015, and planning for the next chapter.

CommNETS brings together clinicians, researchers and consumer groups from Australia, New Zealand and Canada. Its mission is “To improve the outcomes of NET patients through accelerated collaboration between patients, clinicians and researchers in member nations”, with the advantages of being able to not only draw on the collective expertise from the member nations, but also the ability to pool data for studies and clinical trials, allowing us to learn much more about caring for people with neuroendocrine cancers.

Our first day together brought opportunities to hear about the progress made over last 12 months by the various working groups. Highlights included the many conference posters that had been presented, and several key journal articles that had been accepted for publication (for more information, see http://agitg.org.au/commnets/)

Later in the day, the working groups gathered to discuss their various projects and planned activities for the next 12 months. This was a very productive time, bringing much greater clarity and purpose. These discussions extended into our second day of meetings, translating into many firm plans for projects on a diverse range of topics. A project where I spent much of my time was looking at gathering more information about the financial impact of NETs for patients and their families. It will be great to capture this data in order to better advocate for funding and services for our patients.

Some of the other projects include:• Appendiceal NET- Are we overtreating? • Creation of an MEN database • Recommendations for optimal clinical trial design in (advanced) NETs: consensus recommendations for trial endpoints from the CommNETS collaboration • Making pNETs immunogenic • NET classification by cell type • Patients Longtitudinal Analysis of NET Specimens: PLANETS Study • PRRT and Quality of Life • Design and creation of an optimal shared care model for NETS patients in the community • Systematic review of surgical trials in NET • Feasibility of developing a radiological response signature using CT data for NETs

The meeting also brought some fabulous opportunities to share information and experiences with experts from many different specialities, both from Australia and overseas. Unlike most conventional conferences, CommNETS provided a unique opportunity for researchers and clinicians to share their ideas amongst their peers, resulting at times in much rigorous and robust conversation and debate!I am very grateful for the opportunity to have attended CommNETS this year, and very much look forward to seeing the progress that will undoubtedly flow from this very worthwhile collaboration.